What’s in a Name?
I said that this isn’t a blog “about autism” – but as it is a blog about an autistic PhD student’s perspectives, I should probably explain a little about the language I use when talking about autism.
I really love words – probably partly because so much of my trying to understand myself has been rooted in a search for the right words. Words are powerful.
Apart from anything, the words we use to describe autism and the preferences of the different people and groups affected have been the subject of so much discussion recently (See here for National Autistic Society information on “Describing Autism”). This stuff matters – but it’s contested, so I need to be clear about my thinking.
You might have noticed that I use the terms autism/Asperger syndrome quite interchangeably – including when referring to myself. (My specific diagnosis is of Asperger syndrome).
There are two reasons why I do this:
- Firstly, to acknowledge the inconsistent and variable ways that these terms are used in practice. While the only reliable distinction between the two is one of the development of expressive language (people with Asperger syndrome are supposed to learn to speak at the same time as, or ahead of typical children, whereas other autistic children are said not to) – my experience of finding out about the diagnostic labels applied to others suggests that there is massive variation in how these labels are applied in practice by diagnosticians – meaning that knowing a person has “Asperger syndrome” or “autism” doesn’t tell you much about them, and yet the labels are used as a way of excluding people from services and support, as though they were some kind of consistent, objective “truth”.
- Secondly though, I have to admit that I like to ‘play’ with the words, and the ways I can make people think about them. If I say “autistic” about myself, and someone tells me I “can’t say that” because I’m too able, then I refer to myself that way all the more to make a point (because telling me not to do something has one guaranteed outcome). I also choose my language to challenge views, such as that Asperger sydrome is “mild autism”. I use Asperger though – or Aspie to identify with others if I want to show ‘belonging’ to that category, in support gs.roups and other specific settings. And I use “Asperger” if I have to disclose my diagnosis but I’m scared that people will prejudge my abilities and assume I can’t do things because of it.
That last one is tricky because it doesn’t challenge stigma, and perhaps even encourages and sustains it – but it’s about self-defence and protection, and is exactly the kind of thing that I want to be able to hold to account in this blog.
‘Person First’ or ‘Identity First’?
I agree with Jim Sinclair (2013) in having a preference for ‘identity first’ language (See here for Jim Sinclair’s “Why I Hate Person-First Language). This means that I opt for ‘autistic person’ – rather than the ‘person with autism’ formulation that tends to be preferred by professionals and families (though often not by autistic adults themselves). I can’t separate myself from ‘autism’ – I’m not trapped in an autistic shell. It runs through me like the name in a stick of rock, so grammatically separating it from me is a falsehood.
Also (and possibly more importantly) – the logic behind ‘person first’ language suggests that it is important to see the individual ‘as a person’ – but to me that implies that it is impossible to see an individual ‘as a person’ while taking into account their autism. And I don’t see how we can possibly hope to do anything about pursuing equality if we insist on separating a term from the individual. To be blunt, if you need to “remove the autism from the individual” in order to see them “as a person” I think you need to check your own thinking.
I call myself an ‘Aspie’ – as is fairly apparent on this blog. I know it’s not popular among a lot of parents/families, and some autistic/Asperger people feel that it’s ‘too political’ or associated with a kind of cult of superiority. However, it means a lot to me. It’s one autism-related term that hasn’t been imposed on me by others. It doesn’t appear in any of my diagnostic or psychological reports – the stuff that assesses my “deficits” and tries to detail my “needs”.
I chose it, I claimed it, and I’m proud that it’s up there at the heading of each page of this blog.
I hate functional language (where autistic people are labeled as ‘high functioning’ or ‘low functioning’). I won’t use those terms in this blog, unless referring to the words of others, in which case the terms will be clearly marked as quotations – and my aim in including them often be to interrogate and critique their use.
Quite apart from their stigmatizing effect (Can you imagine being labeled ‘low functioning?’ What on earth would that do to the expectations of those around you if that label followed you around – was in your care plans, your medical notes?) I am fairly clear, based on experience, that they are pretty meaningless. Taking myself as an example, I’m quite sure that I’d fall very easily into the ‘high functioning’ category by anyone’s estimation – I learned to speak and read ahead of typical developmental milestones and am now doing a PhD.
However, when I’m curled up on the floor crying and repeatedly flicking my fingers because the environment is too overwhelming, and I feel violated and trapped, I don’t think I look very ‘high functioning’. I certainly don’t feel it. Likewise, when I’m so scared or anxious that I can’t speak – not very ‘high functioning’. Basically, I don’t see any help in these terms, and I find them positively harmful, so you won’t be reading them here from me.
- (I’ve come back to edit this post as I remembered that an autistic person I know actually uses the term ‘Low Functioning’ for themselves, as a way of emphasizing that being verbally articulate is not the same as being ‘high functioning’ – so I guess what I’m getting at here, is that I have a problem with functioning labels being imposed on people, as quasi-diagnostic categories, rather than with people choosing them for themselves.)
I’d be really interested to know what thoughts other people have about their identities (autistic or otherwise) –
- What matters to you?
- How do you decide what to apply to yourself?
- Are there any terms you reject or rebel against?